The View from Where I Sit

Tag: diagnosis

  • WHAT IS AN ASBAH AMBASSADOR?

    WHAT IS AN ASBAH AMBASSADOR?

    By: Daniella Jade Lowe

    The Association for Spina Bifida and Hydrocephalus is a charity that was founded in 1967. ASBAH is the local association and does peer support, activities and events to bring the Spina Bifida and Hydrocephalus community together.

    Katy Raven is the Project Manager for ASBAH. This charity is comprised of volunteers, parents/carers, children, adults and committee members.

    This organisation covers North and West Yorkshire which includes Cheshire, East Riding of Yorkshire, Greater Manchester, Halton-Runcorn, Halton-Widnes, Kingston Upon Hull, Lancashire, Merseyside, Middlesbrough, North East Lincolnshire, North Lincolnshire, North Staffordshire, North Yorkshire, Redcar/Cleveland, Shropshire, South Yorkshire, Wakefield, Warrington, West Yorkshire, Wigan and Wirral.

    ‘Supporting you to flourish and thrive’ is the slogan for the ASBAH foundation. By supporting, informing, and campaigning, North & West Yorkshire ASBAH is continuing to help promote individual choice, control, and quality of life for all the people who use their services.

    It is very important for people who are born with a developmental disability to have a good support network through peer support and befriending, especially if they are excluded from mainstream education and employment and always have to push for inclusion. It helps them to thrive and flourish.

    For the past 13 years, I have been a recipient of this charity’s services. They’ve helped me with medical support, educational advice, Spina Bifida clinics, job-searching assistance, interviews, companionship, advocacy, applying for financial support and wheelchair services. They also played a role in helping me get my first electric wheelchair during my first year of college.

    It all started back in the summer of 2009, when I originally moved to Bradford to start college. Upon arriving at the student accommodation, I met Miss Joan Pheasant, a chairman from the board of the ASBAH foundation. I found out about this charity through online research while still living in Bermuda. My case was slightly unusual because, I think I am the only international ASBAH member.

    For the sake of awareness, this organisation has decided to start an initiative called ASBAH Ambassadors and I’ve chosen to join in to advocate for others with Spina Bifida and Hydrocephalus.

    For example, one way that they do this is by celebrating Spina Bifida Week from October 25th to the 29th annually. During this week, they have campaigns and forums to educate people on the subject.

    In my opinion, being an ASBAH Ambassador is about disability representation, not just sharing information and advocating. It’s also about raising awareness. For me, being an ASBAH Ambassador is also about networking. This is why we have a befriending initiative too.

    I strongly feel that this charity has helped me to mature and properly manage my disability related issues. I definitely found it difficult to prioritise my medical affairs, finances, social life and education, especially during my first year of college.

    When I first started college, I remember participating in the Go Folic Campaign with ASBAH for Spina Bifida Week (https://www.totalhealth.co.uk/blog/importance-folate-prior-conception-go-folic-you-frolic). These campaigns and forums taught me how to improve the way I take care of myself, especially in diet and personal hygiene. ASBAH has definitely helped me to flourish and thrive in my health, education, social life and finances.

    Joan Pheasant has even helped me with transportation to and from appointments and legal advice (https://www.keighleynews.co.uk/news/12965951.keighley-group-takes-taxi-overcharging-campaign-district-wide/.)

    I’ve also been to various annual social events like afternoon tea at the Clevedon House in Ilkley and Christmas dinners in Leeds, as a member of the ASBAH Association. One Sunday, we even went to lunch at the Cow and Calf in Ilkley.

    I appreciate this and feel it was beneficial to me because I know what it is like to live in a country that does not provide these services. I’ve learned a lot from this charity, like how to approach interviews and applying for benefits. I also feel that my social skills have improved. This charity is definitely needed and a great asset to the community especially for the expectant families and parents with Spina Bifida and Hydrocephalus. When I grew up I didn’t have access to these services. I went to private nursery and preschool because not everyone was willing to take on a child with a disability.

    For more information, you can check out their Facebook page: https://www.facebook.com/ASBAHNWY.

    You can also log onto their website: https://www.nwyasbah.org/?fbclid=IwAR3GIzZsOSyRXiRwD7l-qiVaDIle0ezgXHk7puKhBNDnh_PEPTT6cuVuBP4.

  • Models of Disability

    Models of Disability

    By: Daniella Jade Lowe

    What is Disability?

    Over the years, classifying and defining disability has become quite tedious. There are various examples to describe disability.

    Disability is seen as a ‘social construct.’ It is the idea that society and its’ institutions have the authority to construct disability around social expectations. In medieval times, disability was constructed around a person’s moral behaviour.

    Disability is defined as a physical or mental condition that limits a person’s movements, senses, or activities. According to an article I read from meriahnichols.com, ‘dis’ is another way of doing and being. The term disability is an ability to do or be in another way. The term disabled is an ability to do or be something, in another way-https://www.meriahnichols.com/3-reasons-say-disability-instead-special-needs/.

    Even though, I’ve only identified three models of disability, according to research there seems to be loads more.

    Models of Disability are tools for defining impairment and for providing a basis upon which government and society can devise strategies for meeting the needs of disabled people.

    Medical Model of Disability

    The medical model describes disability as a consequence of a health condition, disease or caused by a trauma that can disrupt the functioning of a person in a physiological or cognitive way.

    This model is a conceptualization of disability as a condition a person has and focuses on the prevention, treatment or curing of the disabling condition.

    Functional Model of Disability

    This model is similar to the medical model because it conceptualizes disability as an impairment or deficit. Disability is caused by physical, medical or cognitive deficits. The disability itself limits a person’s functioning or the ability to perform functional activities.

    Social Model of Disability

    The Social Model of Disability includes people’s views, opinions and attitudes. It has been the prominent approach to disability over the last 30+ years.

    It was developed by disabled people based on real life experience of discrimination, inclusion and challenging disabling barriers. It is outward looking and focused on the things in society that can be changed or improved, like, the environment, information, communications and people’s attitudes.

    It’s a problem solving approach which gives disabled people greater control over vital, even basic decisions, like, from what time to get out of bed on a morning to employability and education choices.

    This approach enables you to better understand how reasonable adjustments can be implemented. It also focuses on the things you can influence or change and promotes valued skills.

    In conclusion, the purpose behind the models of disability is to highlight the political struggle of disability. It analyzes the ‘problem of disability.’ It also affects policy making, so that we can make positive change in our society for people with disabilities.

    Since laws are already created to discriminate against disabled people by default, we need to make sure that the Social Model of Disability is pushed to ensure equality.

    For more information on the various models of disability, check out this website: https://www.disabled-world.com/definitions/disability-models.php.